Dr. Diana, both a doctor (therapeutic optometrist), and a patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos Syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

If you have EDS (or joint hypermobility) with dysautonomia (some may say “POTS”), and/or Multiple Sclerosis, this is thread to respond to if you are interested in participating in pre-treatment trials and/or treatment trials. If you can come to Texas between Oct.8 and Oct. 19, please indicate so. If not, please let us know if you are interested in treatment trials only. More information can be found under “Articles and Handouts” (see this listed on the right hand side of the front page of the website). Thank you! Dr. Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care

One question that wasn’t answered on the “Initial Schedule & Instructions” page, how many hours or days is the testing going to take? Can we fly in and out the same day, for instance (save on a hotel expense.. those flying in are already going to have to rent a car, etc.).

I am interested, just can’t give a 100% for sure till I speak to my husband about this. I also wonder if the “few questions” might disqualify me anyway (such as are there any meds we might be on that would disqualify us, or previous treatments, such as CCSVI venoplasty/stent(s)?)

I would love to be in your trials but i am not able to fly there for the pre testing. Please put me on your list for trials. I was diagnosed in May of this year with Classical Type Ehlers Danlos Syndrome and have many pots symptoms.

One question that wasn’t answered on the “Initial Schedule & Instructions” page, how many hours or days is the testing going to take? Can we fly in and out the same day, for instance (save on a hotel expense.. those flying in are already going to have to rent a car, etc.).

I am interested, just can’t give a 100% for sure till I speak to my husband about this. I also wonder if the “few questions” might disqualify me anyway (such as are there any meds we might be on that would disqualify us, or previous treatments, such as CCSVI venoplasty/stent(s)?)

Thanks for this opportunity Dr. Diana!
~jerri

Wow, Jerri, you are FAST! I was going to put up the vid tomorrow (and the financials). The vid explains it will take about a half of a day. For EDS/MS, I don’t think there is any medication or treatment (such as angioplasty) that would hide this result, but some meds make the levels lower. We’ll pick the ‘low hanging fruit’ for the first few, I think. Can you remind me—were you responsive to Zyrtec, at all? That may help…

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care

Yes, we can come to Texas for pre-testing between Oct. 8, 2012 and Oct. 19, 2012. I am interested in my son, my daughter and maybe myself participating, if you think that is possible. If not, my son really needs to be one of the five for the pretesting. He fits your descriptions exactly. We have his head circumferences, he does have increased intracranial pressure( cause unknown) He has POTS, hyperflexability, he has had paralysis while laying flat and it scares him. We have several MRIs Pet Scans, (show lack of uptake in cerebellum and no known cause) We can bring those CDs, if you want as well. Can’t wait for trial to start. Thank you, for all of your work and dedicated efforts to help people.

Wow, Jerri, you are FAST! I was going to put up the vid tomorrow (and the financials). The vid explains it will take about a half of a day. For EDS/MS, I don’t think there is any medication or treatment (such as angioplasty) that would hide this result, but some meds make the levels lower. We’ll pick the ‘low hanging fruit’ for the first few, I think. Can you remind me—were you responsive to Zyrtec, at all? That may help…

Dr. Diana I tried Zyrtec, but it made me so tired and more fatigued than I already was and loopy that I couldn’t stay on it. I switched to Claritin and keep on the Zantac daily.

I just watched the vid and feel a little confused. If this is “clinical trial pre-testing” and those who participate will be at the front of the line once the clinical trial gets the green light, will EVERYONE who participates,eventually, in the clinical trial, have to have this pre-testing? How does the pre-testing fit in the picture of the clinical trial?

I guess what I am asking is what might it gain me/us that are out of state and would be totally scraping to get the money together to come to Texas for this, besides being at the front of the list to start the clinical trial(s)? My husband is supportive of me trying to get out there, but we need to weigh the pro’s and the con’s so to speak.

Anything you can share that will help us with this decision is appreciated.
~jerri
Oregon

Hi Dr. Diana, I finally figured out how to register on your forum, lol! I am very interested on this clinical trial. My doctor is at his wits ends, and does not know what else to do with me. I live in Houston, so I will be able to make it to your area easily. I am available from Oct 9th to the 13th. Let me know what I need to do next, thanks

Oh, and I forgot to mention that mt daughter who is 7 was just Dx’d with POTS, but she may be to young to participate I am assuming. So far we have just increased her fluids and she is on Pepcid which is helping alot. I suspect she had mcas as well.

I will be posting this elsewhere too, but thought this was a good place to start.
I have a site on Cafe Press where I sell EDS related things. It’s a work in progress and I need to update it but I am going to be donating 100% of MY proceeds to Dr. Diana for her ongoing costs and research.
If you have a request for ANY design, EDS or not, let me know and I will be happy to add it to the site. http://www.cafepress.com/stryderslist
Keep in mind, proceeds for these type of sites are nominal, but any little bit will help.
email me directly if you have a request:.(JavaScript must be enabled to view this email address)

Hi. I just have a few questions, so I can figure out if it is worth it to fly in from Canada for the pre-testing.

1. Is this the POTS/dysautonomia clinical trial (I am asking because I see that a lot of ‘others’ can enter as well that do not have POTS? Or perhaps you are running 3 different trials? For instance, the EDS/MS group will be for dysautonomia/POTS and the other groups will have different testing?
2. If you do the pre-testing, are you guaranteed entry into the clinical trial?
3. I am in Canada, and I am wondering if it might be cheaper to have the pre-testing blood work done in my own city and pay for it myself. Would the cost of the blood work be less than flying out there and would this be an acceptable way to participate in the pre-testing? OR, if you need the blood, could it be drawn here and purolated to you at my cost? I already have Fundus Images.
3. Can you be guaranteed entry into the clinical trial if you are unable to participate in the pre-testing?
4. I assume the 1/2 day is for the pre-testing? How long will the clinical trial run for (need to add up hotel costs, etc.)?
5. Is the clinical trial in the same place as the pre-testing (need to add up flight costs)?

I will be posting this elsewhere too, but thought this was a good place to start.
I have a site on Cafe Press where I sell EDS related things. It’s a work in progress and I need to update it but I am going to be donating 100% of MY proceeds to Dr. Diana for her ongoing costs and research.
If you have a request for ANY design, EDS or not, let me know and I will be happy to add it to the site. http://www.cafepress.com/stryderslist
Keep in mind, proceeds for these type of sites are nominal, but any little bit will help.
email me directly if you have a request:.(JavaScript must be enabled to view this email address)

Anj

Anj, you ROCK. I can’t thank you enough. I’m emailing you with a few thoughts (to include our brothers and sisters with other invisible illnesses), but I can’t tell you what this means to have your support. BIG hug, Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care

I am available and in Dallas! I’ve been diagnosed with EDS and “POTS.” I also have Anemia, Gastroparesis, and Vitamin D deficiency. I’d also love to volunteer and help out with anything you may need. I’m self-employed in the music industry so I’m brainstorming event fundraising ideas. Email me and let’s make this happen!

I emailed you with my information. I guess I’ve gotta start somewhere in the planning process - or potential planning process.

I am interested and think I can pull off the trip. I’ve been brainstorming.

Thanks. PS. If you have any bloodwork that you’d like drawn in advance, let me know and I’ll TRY MY BEST to do so. I think I’m due for some bloodwork anyway and I’ll throw in extra tubes if I can. Not my decision but I figured I’d ask you in case it would both: be helpful and i am able.

This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.

What others say

“Diana Driscoll quite literally lifted us out of the "pit of medical despair". She was, and is, not only brilliant in helping us with diagnosis and treatments, she truly cares about
us. She has the gift of Problem-solving when the problems seem unsolvable. We are so grateful to have someone like her in our corner, helping us solve the mysteries of Ehlers-Danlos and all that goes with it. She has a unique perspective on the symptoms because she lives them every day. As our daughter would say, ‘You rock, Diana’!”